My Life as a Carer
Having cared for my mother when I was a child. And in the years following, it was more on an emotional and psychological level. I was more prepared for caring for my husband when he first suddenly became ill in 2005 .
Though he wasn’t officially diagnosed with Chronic cavitating Aspergillosis until 2013, I found the condition frightening. Every time he coughed I was scared of the haemoptysis being uncontrollable, I was always on alert, his breathlessness was alarming.
Since his hospital admission last year with severe pneumonia, caring has increased on every level, personal, monitoring food intake etc etc, as with the Aspergillosis there is always the unknown. It is very day by day , moment by moment.
Being an organised person , I immediately found out what I could , that would help me too . I rented a stairlift, got a panic alarm installed , got in equipment .
So in helping me , it was also helping him to gain a feeling of independence again as much as possible.
I got him interested in Lego , as creativity is a wonderful therapeutic tool and I can sit and knit or create a card etc at the same time .
I have tried to bring a balance to life , so that I have some me time too , yet I am still at home . I created a quiet room , somewhere I can go , to breathe, get a break , get back to me for a while .
I make sure I keep social with Facebook . I belong to many creative groups and have made many genuine friends . I pen pal across the world . These are all things I can do alongside .
The pressures come physically, as well as caring for someone with such an unpredictable life long condition, there is a house to clean, house admin, shopping, looking after the animals, family birthdays, Christmas etc. It all has to be fitted in somehow .
At first when my husband came home from hospital , I made charts, one for his medication, one for food, one for his stats which I took regularly. So should anything show signs of change , I could contact someone for help with the information at hand. I now still monitor his food , meds and daily how he is .
Caring is about understanding the condition fully, not having expectations, and as much as possible, for the carer to not lose their identity which can easily be absorbed into the role .
Education of the condition, awareness and self care, are a carers essential tools .